Myelodysplasia and awful taste!

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Hi everyone, I’m new to this forum. My dad was diagnosed with myelodysplasia 3 years ago, and is struggling at the moment.

One of the things that the doctors don’t seem to have any idea about, and I was wondering if anyone here does, is that for the last four or five months my dad‘s taste has been altered – everything tastes horribly sweet and unpleasant, and his mouth is permanently dry. He was very skinny in the first place, but this has totally put him off his food so he’s lost a stone and a half – which he can ill afford!

Has anyone experienced this?

Thanks so much!

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Hi @Bea a great big welcome to our forum and you are obviously worried about your dad.
I will copy your post to the Blood Cancer UK nurse advisors for you @BloodCancerUK_Nurses and I also hope someone might help with their experiences too.
Your dad’s GP might be able to help with food supplements of some kind to ensure he is getting the nutrients he needs.
Sucking on ice cubes, drinking water and any liquids and mints or any sweets.
Has your dad had Covid because I have heard taste can be altered after it.
The main thing is that you both look after yourselves, it is hard work being a carer too, and be kind to yourselves. Please keep posting

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Hi @Bea,
I am really pleased you have found us. I hope having this little space to share experiences & gain support will be helpful for you.
I am so sorry to hear about your dads diagnosis of Myelodysplastic syndrome (MDS) and his change of symptoms. We appreciate how miserable that can be when his appetite is already poor.

Can i ask is dad on any medications at all? Or has there been a specific event that has triggered his taste bud change?

Having a constantly dry mouth can be really frustrating. I have linked here to some information which may help in some small ways to manage this- Mouth problems and treatments | Cancer Research UK. You can also seek support from dad’s GP as they can prescribed artificial salvia gels or similar which can sometimes be of help.

I would be keen to know if dad has a clinical nurse specialist ( cns) under his haematology team at all?

I also would be keen to know if your dads weight loss & reduced appetite would warrant input from a dietician. We know that it can e a vicious circle and if dads appetite is reduced his hydration levels may also be impacted, which can also add to a dry mouth.

I appreciate you may prefer to talk things through and do know that our helpline is here for you 7 days Bea- Blood cancer information and support by phone and email | Blood Cancer UK.

Best Wishes, Lauran

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Thank you both so much for your replies, it was really lovely to read them.

I’ve passed on your advice and had a look at the website you recommended.

He did get Covid very recently from a hospital stay, but the problems with his mouth predated this.

He does have a clinical nurse specialist. I’ve talked to him about speaking to his GP for a dietitian referral.

Thank you both so much for your help, it’s very much appreciated.

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